MPIP: Melanoma Patients Information Page

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The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Haven't been on in awhile. Dirk and I have been fighting hard to get his brain mets under control. After 3 rounds of Abraxene, the January scans showed that 6 brain tumors started growing. Tough news, because in December, it looked like they were all stable. He has already done WBR, so we were scheduled for Gamma Knife on 2/10. Since then, he has not bounced back. For the last week he has been sleeping a lot, very little appetite, some confusion, difficulty speaking, etc. I contacted MD Anderson and Dr Papa saw him today. I knew before we got there, that he was not good, his skin and the whites of his eyes were yellow. But I was hoping they could admit him and hydrate or give blood transfusion......anything....

Sadly, after getting exam and blood results, Papa said his liver is failing. No more treatments. We have tried all that we can. The social worker brought in a batch of brochures for hospice care and i need to call her in the morning with our choice. Doc said we could have a day, a week, possibly a month (highly unlikely though).

Just trying to wrap my brain (and heart) around this. Not sure how to deal with this next part, but as always, one day at a time.

I finished my 4th dose of Yervoy 5 days ago. Minimal symptoms with 1st and second dose ( a little itching, occasional diarrhea (prob food related) and a little tired. After 3rd dose started to have some fever and chills just at night on days I was really tired. I also developed some joint pain especially in my left hip ( surgery on right leg) and some in my back. This was severe at times. Also just generalized stiffness like someone with arthritis. I don't know if this is from the IPPI. I was also doing radiation on my right leg at the same time and think the awkward position could have something to do with this. This is better in the last week ( finished rad thx last week), but I still have aching in my hips at night.

Had visit w oncologist with last treatment and he told me my liver enzymes were up. I also found out LDH was up. He also did a panel to check for arthritis due to the pain I was having. This was fine except C reactive protein which was 26-nml cut off is like 10. This is a sign of inflammation in the body. My dr said he wasn't worried about this number, but sounded more concerned about liver enzymes. Of course I scoured the Internet on CRP levels and found this could be a marker of advancing disease in melanoma patients (ugh).

So now of course I'm thinking pain in the bones must be mets. But, the more rational side of me thinks this should all just be related to the Yervoy not to mention the radiation which I know caused a lot of inflammation due to the increased redness in my skin (fortunately not painful except a little irritated in groin area where undies rub).

Has anyone else had LDH and liver enzymes rise during Yervoy treatments? How about CRP levels?

I'll do PET/CT and brain MRI in next 2-3 weeks. This time severe scanxiety.

I know it's been a while. So I'll give y'all an update. My first week of interferon SUCKED! I threw up constantly, could barely eat and I got sick of crackers real fast. I also lost 10 pounds! So I told my doctor and she felt so bad about it. She temporarily stopped treatment because it was raising my liver enzymes WAY too high, like 300 over. So I spent the last week getting blood drawn and eating up a storm haha. Oh, and Matt is finally my boyfriend! YES!! He's such a sweety.

Anywho, today I was given the ok to do treatment again. They included a steroid and only gave me half the original dose of interferon. So much better! Well they gave me a LOT of fluids so I've been peeing a lot, but the big thing is I'm not sick and I can hold down food. I did have a stomach cramp and a headache, but I imagine it's an easy fix.

My liver is good, I'm feeling not horrible but very hot, in the not sexy way and I am almost halfway done with my first month! Praise God! Oh, no lymphedema! Healing very well, I can lift my arm high enough to wash my hair, shave (ish), the good stuff.

I am still trying to figure out why i have melanoma when i have NEVER abused the sunshine....hmmm...i used retinol and SPF sunscreen when i went out in the sun and now i am wondering if these chemicals cooked a cancer in me...

This is an old post from AOL and i wished i had read it when it was published back in 2010...

WASHINGTON (May 24) -- Almost half of the 500 most popular sunscreen products may actually increase the speed at which malignant cells develop and spread skin cancer because they contain vitamin A or its derivatives, according to an evaluation of those products released today.

AOL News also has learned through documents and interviews that the Food and Drug Administration has known of the potential danger for as long as a decade without alerting the public, which the FDA denies.

The study was released with Memorial Day weekend approaching. Store shelves throughout the country are already crammed with tubes, jars, bottles and spray cans of sunscreen.

The white goop, creams and ointments might prevent sunburn. But don't count on them to keep the ultraviolet light from destroying your skin cells and causing tumors and lesions, according to researchers at Environmental Working Group.

In their annual report to consumers on sunscreen, they say that only 39 of the 500 products they examined were considered safe and effective to use.

The use of the hormone-disrupting chemical oxybenzone, which penetrates the skin and enters the bloodstream.

Overstated claims about performance.

The lack of needed regulations and oversight by the Food and Drug Administration.

But the most alarming disclosure in this year's report is the finding that vitamin A and its derivatives, retinol and retinyl palmitate, may speed up the cancer that sunscreen is used to prevent.

Environmental Working Group

A dangerous additive

The industry includes vitamin A in its sunscreen formulations because it is an anti-oxidant that slows skin aging.

But the EWG researchers found the initial findings of an FDA study of vitamin A's photocarcinogenic properties, meaning the possibility that it results in cancerous tumors when used on skin exposed to sunlight.

"In that yearlong study, tumors and lesions developed up to 21 percent faster in lab animals coated in a vitamin A-laced cream than animals treated with a vitamin-free cream," the report said.

The conclusion came from EWG's analysis of initial findings released last fall by the FDA and the National Toxicology Program, the federal government's principle evaluator of substances that raise public health concerns.

Based on the strength of the findings by FDA's own scientists, many in the public health community say they can't believe nor understand why the agency hasn't already notified the public of the possible danger.

"There was enough evidence 10 years ago for FDA to caution consumers against the use of vitamin A in sunscreens," Jane Houlihan, EWG's senior vice president for research, told AOL News.

"FDA launched this one-year study, completed their research and now 10 years later, they say nothing about it, just silence."

On Friday, the FDA said the allegations are not true.

"We have thoroughly checked and are not aware of any studies," an FDA spokesperson told AOL News. She said she checked with bosses throughout the agency and found no one who knew of the vitamin A sunscreen research being done by or on behalf of the agency.

But documents from the FDA and the National Toxicology Program showed that the agency had done the research.

"Retinyl palmitate was selected by (FDA's) Center for Food Safety and Applied Nutrition for photo-toxicity and photocarcinogenicity testing based on the increasingly widespread use of this compound in cosmetic retail products for use on sun-exposed skin," said an October 2000 report by the National Toxicology Program.

FDA's own website said the animal studies were done at its National Center for Toxicological Research in Jefferson, Ark. And it was scientists from the FDA center and National Toxicology Program who posted the study data last fall.

In a perfect world

The ideal sunscreen would completely block the UV rays that cause sunburn, immune suppression and damaging free radicals. It would remain effective on the skin for several hours and not form harmful ingredients when degraded by UV light, the report said.

National Cancer Institute

Graph of melanoma of the skin rates from 1975 to 2006. APC stands for annual percent change and AAPC stands for average annual percent change.

But in the U.S., there is currently no sunscreen that meets all of these criteria. European countries have more chemical combinations to offer, but in the U.S. the major choice is between the "chemical" sunscreens, which have inferior stability, penetrate the skin and may disrupt the body's hormone systems, and "mineral" sunscreens zinc and titanium dioxide.

Increasingly, as AOL News reported in March, the industry is using titanium dioxide that is made nanosized, which a growing number of researchers believe have serious health implications.

The sunscreen industry cringes when EWG releases its yearly report -- this is its fourth. The industry charges that the advocacy group wants to do away with all sunscreen products, a claim that is not accurate.

The report's researchers clearly say that an effective sunscreen prevents more damage than it causes, but it wants consumers to have accurate information on the limitations of what they buy and on the potentially harmful chemicals in some of those products.

EWG does warn consumers not to depend on any sunscreen for primary protection from the sun's harmful ultraviolet rays. Hats, clothing and shade are still the most reliable sun protection available, they say.

Don't count on the numbers

Some of us are old enough to remember when the idea of having a tan was good, a sign of health, when billboards and magazine ads featured the Coppertone girl showing off her tan when a puppy pulls down her bathing suit bottom.

Going for that tan, we coated our kids and ourselves with sun blockers with sun protection factors of 1 or 2. Some overly cautious parents might have smeared on a 4 during the hottest part of a day.

But we've learned of the dangers that come from exposure to the sun's rays, especially ultraviolet A and B. So today, drugstore shelves are crammed with sunscreens boasting SPFs of 30, 45, 80 or even higher.

However, the new report says those numbers are often meaningless and dangerous because products with high SPF ratings sell a false sense of security, encouraging people using them to stay out in the sun longer.

"People don't get the high SPF they pay for," the report says. "People apply about a quarter of the recommended amount. So in everyday practice, a product labeled SPF 100 really performs like SPF 3.2, an SPF 30 rating equates to a 2.3 and an SPF 15 translates to 2."

In 2007, the report says, the FDA published proposed regulations that would prohibit manufacturers from labeling sunscreens with an SPF higher than "SPF 50." The agency wrote that higher values would be "inherently misleading," given that "there is no assurance that the specific values themselves are in fact truthful."

This is being widely ignored by the sunscreen makers who are heavily advertising their 80, 90 and 100 SPF products.

"Flouting FDA's proposed regulation," companies substantially increased their high-SPF offerings in 2010 with one in six brands now listing SPF values higher than 50. "Neutrogena and Banana Boat stand out among the offenders, with six and four products labeled as 'SPF 100,' respectively," the new report says.

I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do? I am so glad that I happened across this site it has brought so much information for me since my doctor is not familiar with Yervoy. Will let you know what he says to do, can't call for another hour since Wisconsin is an hour behind us. yoopergirl

My brother is currently in the hospital undergoing IL2(week 2 of 1st phase). I was just wondering if anyone knows anything he could try to relieve some of his insane itching besides Sarno lotion, and there is a only a shower, so no oatmeal baths. I will be at the hospital all day and night with him, unfortunately I wont be able to check my email, but you can text me any ideas, and I can run out to the store! My number is 954-851-3793

I have been taking Zelboraf since Oct. 2011 and so far NED! My question is how long do we stay on this drug and has anyone experienced severe hair loss, loss of appetite and stomach problems? Any help would be greatly appreciated, thank you.

Judy

Phillipeans 4:13
I, we, you can do all things through Christ who strengthens me.

I am going for my second ippi infusion this week. I had been optimistic and still am, but I have had three tumors now appear on my hips they are not surface ones but deeper and feel like the size of a grape. I wonder have others had tumors appear while on ippi and then disappear, or is this a bad sign that it is not working for me?

I have a tumor in my lung which seem to be getting slightly bigger just judging by my breathing but now seems slightly better, or I could be just use to it, but at least it doesnt seem worse.

New here... Going in for SLNB & wide-excision on Friday. Was diagnosed on 2/10 and my path report said it was 2.4mm and T3a... doc mentioned it likely being Stage 2. Doc didn't seem too worried about it spreading and we didn't discuss what would happen if the SLNB was positive. Anyone have a similar diagnoses? If so, what has your experience been? I've only told a few "need-to-know" people about this... but I keep getting the same response... "Oh, so & so had melanoma, they cut it out and they were fine." Hmm. Any intelligent advice out there? FYI, mine was a new mole on my abdomen that literally came out of nowhere and became raised & sore to touch within a year. No genetic history that I know of. Thanks!

I'm 5 years NED after treatment! My oncologist has released me, but I still have that fear in the back of my mind of recurrence. I felt fine when originally diagnosed, so now I wonder what signs should I be on the lookout for?

Hi everyone, I found this web page and have been doing some research. I am finding all the info confusing. But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma. I didn't even get given a copy of my pathology results of the mole that was cut out of my back. I did see a surgeon yesterday and asked him if I could see it. The only info I took in was that it was 1mm and Clark level IV. I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was. I also wasn't given a 'stage' like I see so many other people have been given.

The surgeon says that is all that should be needed and that I have a 15% chance it could return. Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them.. No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone).

I do remember getting a swollen gland under my armpit recently that took a week or two to go down. Could this be related? My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this. I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.